Archive for August 2009


8/22/09 – Seizure Follow Up

It was a long week with Renny.   She left the hospital with two prescriptions:  phenylbarbital (anti-seizure) and amoxicillin (antibiotic).   The first few days after returning from the hospital were…awful.  She was so irritable, uncomfortable, whiny, flailing herself around, needing constant attention, oh, and diarrhea…just not good…and just…high maintenance…constantly.  And obviously we felt horrible that she was feeling so bad inside.  We called the hospital on Sunday to explain our concerns; they told us to call neurology on Monday if she wasn’t any better.  We called neurology on Monday to explain our concern; they told us to call her pediatrician on Tuesday if she wasn’t any better.  We felt that we were just brushed off both times and were not very happy with that.  But, we waited until Tuesday to call pediatrics and talked with Renny’s nurse.  Finally, someone who was interested in our concerns.  After listening to everything, she talked with the doctor, who talked with the urologist, whom both decided that Renny did not need to be on the amoxicillin, something about the extremely minute amount of bacteria in the culture and how it may have just been a contaminate and not an infection.  In any case, we were glad to take her off of it.  I had amoxicillin once many years ago and had extreme stomach cramping from it.  It was theorized that perhaps this medicine was a main culprit of her irritability and most certainly the diarrhea.

Wednesday morning arrived, and Renny woke up….an…almost new person.  Though still not herself by any means, she was noticeably less irritable, and a little happier.  Though relieved that she was better, we were still concerned because she still was quite far away from her normal self.  Still quite high maintenance, needing a lot of attention, especially because she wasn’t just sitting down and playing like she used to.  She seemed somewhat happy when moving around, climbing on the couch, rolling around on the bed, etc., but that’s it, and that’d be find except we just really couldn’t be with her moving her around all day!

So, Friday came, along with her neurology check-up appointment.  We expressed all of these concerns with the doctor, and of course Renny was as happy as could be in the room, so she made liars out of us!  No, they did believe us, and told us to basically give it a month, and if she still seems irritable and/or her personality is still not quite the same, then they can try a different medicine.  The reason they do not try a different one now is because there are very limited available/approved anti-seizure medications for children under 3 years old.  Phenylbarbital has been around for like 60 years and has much evidence for working, so they like to stick to that one if possible.  It was also explained again that it was of great great concern that her first seizure was so long.  The neurologist said that they get concerned even after a 15-30 minute long seizure, and also why it is so important to prevent further seizures, by using the medication.  Having one seizure brings higher risk of having another, so we need to try to prevent it.  When asked about possible damage caused by the seizure, he said it is uncommon, but not a given, and also reassured us that if she had any damage we would have noticed by now.  Overall, we think she seems okay cognitively, but with some of her non-usual self behaviors….I guess right now I am assuming (hoping) it’s the medication.  When I was in the ambulance with her on the way to the hospital, that’s all I was doing, was praying, praying, praying, that she would not have any long lasting consequence, no damage done to her brain.  I found out later that that’s what my husband (T) was praying for the whole time too.  She seems to be doing all of the same things as from before the seizure – making her signs, nodding yes and no to questions, yelling at her brothers, playing with her doll, etc.  She does act a little loopy at times (!) but again I’m hoping this is the medication.

Since Friday’s appointment, Renny does seem to be getter a little better each day.  Again, she is still not totally back to her normal self, but she is starting to need less attention, starting to play a little by herself, and more happy.  Again, if after a month these side effects hadn’t disappeared, then they would try a different medication.  The plan is, because of her age, to keep her on for 18 months, in which the hope is her brain will “outgrow” this seizure tendency per se.  Then they will slowly wean her off over several weeks, to allow the body to adjust.  Sadly, after taken off medication, she may have a 50% chance still of having a seizure.  This depends, I guess, on the results of her EEG tests.  We have to take her to have her first sleep-deprived EEG in a few days.  We have to wake her up at 2 a.m. and keep her up until 10:00, when her test is.  This will give a “baseline” of her brain activity, and because sleep deprivation can trigger seizures, (which hopefully she will not have one) this will catch the brain action during this state.  Or something like that.  She will start awake, then hopefully she will fall asleep, and the after a bit, they will wake her up suddenly with lots of flashing lights and stuff.  Somehow they will get a “normal” or “abnormal” read from this EEG and then do another one after the 18 month period to compare.  If it is “normal” both times, it gives her a better chance of not having another seizure.  I think I got it right.

Then, the following week, she goes in for an MRI of her brain, to get better more detailed pictures of her brain, specifically the fluid in her brain controlled by her shunt.  This will be good timing, as her neurosurgeon from her birth shunt-surgery will be in town that day, so he can look at the images as well.  Not sure if it would be good or bad to find something there.

SO.  Renny is slowly recovering…as are we.  It’s been a long process.  Stupid seizure.  Still mad at it.  But, we are getting through it.  And I am thankful that she IS recovering.

Prayer Requests!    For God’s hand in her healing:  That Renny would FULLY and SOON recover from the seizure and the side effects of the medication.  That she would NOT (ever) have another seizure.  That the EEG  and MRI have good results.  That there would be no other bumps in her road anytime in the near future.


8/15/09 – Seizure

Renny had a  seizure – her first seizure –  2 mornings ago.  It was not a good experience.   I “happened” to have a meeting that morning and so was up earlier than normal, and I “happened” to go into her room to check in on her – I rarely do this – and when I walked in I heard some strange noises coming from her and when I looked in her crib she was seizing.  We had no idea how long this had been going on.  I immediately grabbed her and brought her in our room, where my husband quickly checked the Internet, which said if it was a first time seizure, to call 911.  In less than 3 minutes the First Responders came, followed shortly by the paramedics, which by this time the seizure had been going on for at least 10 minutes.  Once in the ambulance, they tried getting an IV in her to give her medicine, but they couldn’t get it in, so they gave her a shot instead, which I guess was the same medicine but took 10 minutes to work rather than the IV’s immediate effect.   She got a second shot halfway to the hospital, and once there they finally got an IV in.  The shots had slowed down the seizure activity, but even after the IV she was still doing some twitching somewhere between 7:30 and 8:00 (I can’t remember exactly).  SO, her seizure lasted at minimum of 90-120 minutes, possibly more, since we don’t know when it exactly started.  We find out later that a seizure of even just more than 5 minutes recommends emergency treatment (at least for the first time seizure), and even 30 minutes is seen as a prolonged seizure.  So, she had quite the lengthy seizure, and it was hard on her poor little body.

After a variety of tests,  to check for infection and whatnot, they also did a CAT scan to make sure there wasn’t a problem with her shunt.  None of these tests showed anything.  They talked about tapping her shunt to check the fluid to see if there might be an infection there, but since they saw no other signs pointing to an infection, they decided not to (to avoid other possible risks from taking the tap).   It was a long day – most of it is a blur actually.  She slept most of the time, due to recovering from the seizure and also from the medication in her.  She stayed the night for observation.  We learned that she is going to be on anti-seizure medication for 18 months.  They have no definite cause for the seizure, but they did find in her cultured urine sample a strain of bacteria she has never had before.  So, this means she did have an infection, but it only could have triggered the seizure if it had caused a fever first (which actually would have been the trigger), but we don’t know for sure if she had a fever beforehand or not.  She had cried 2 separate times during the night; I checked on her the first time, my husband the second time, and we both noted to ourselves that she felt warm, but we attributed it to  a warm room.  So, she very well may have had a fever from the infection and triggered the seizure…..but we don’t know that for sure.  It will most likely be ruled a prolonged seizure due to “unknown” cause.  Febrile seizures, which you may have heard of, happen with young children, triggered by a fever, but are usually less than 15 minutes long, so I do not think they will classify this as a mere febrile seizure.  Having spina bifida did put her at a slightly higher risk of having a seizure, but it is still not “common” for individuals with SB to have seizures.  There’s a lot more info on seizures, but too much for here.

For now, Renny is home, but she is very worn out.  The medicine is also making her feel very unsettled, restless, off balance, and tired.   Her body will supposedly adjust to the medicine in a few days to a week and she will no longer have those side effects.  We go in for a follow up check later in the week.  The pediatric neurologist was unavailable when we were in the hospital (we met with his PA/assistant and the adult neurologist while there), so we will be able to meet with him at this check up.

Please pray for Renny, that she will recover completely from this seizure, which was so long and hard on her body.  Pray there will be no long lasting consequences/effects, that she will quickly adjust to the medicine, that she will bounce back to her normal self, and that she will not have any more seizures.  (I know many people have a seizure disorder, but the length of her first is of concern.  It would not be good for her to experience another one, especially of that magnitude. )  I will update again after her check up next week.

8/7/09 – First Step

We are supposed to be working with Renny on her walking every day.  We don’t.  We should, but we get busy, put it off, and….you know how things go.  It’s such a hassle getting her in her big brace, and she hasn’t been the most cooperative the few times I did try to practice with her.  Yes, poor excuses, I am aware.  We do have her stand in her stander everyday, at least once or twice a day, and I do try to practice crawling with her each day.  And I’ve started helping her move up and down the stairs (with much help, obviously) to provide further strengthening of arms and legs.  And of course she is always moving around on the floor and climbing up our couches and so forth.  BUT, we have not been very good at strapping her in her big tall HKFO braces and working with her on walking with her walker.

So, two days ago, we decided to try to film her practicing walking.  Amazingly, she was very willing to work that night.  It may have been the camera – she likes to pose for cameras.  In this video that you are free to view, she did really, really well.  I have to hold on to her hips usually, and move her legs for her while holding on to the walker so it doesn’t roll away.  As you will see, I was able to let go of her several times and she was able to stand on her own (holding on to the walker), which shows she is bearing weight much, much better nowadays.  She has never, ever moved her legs forward in a walking action on her own before….until that night.  It was very quick and subtle, and she used mostly her hips to move it, but she moved her right  leg forward all by herself.  We were so preoccupied with everything, we didn’t even figure out until later that – yes, she had taken her first step!  Very cool.

The next day (yesterday) she had physical therapy and of course would not cooperate.  But I have made a vow to really, really, try to practice with her everyday.  And, I did this morning!  So, I’ve kept my vow for one day.  Let’s see how I do tomorrow, and the next day, and so on.  That one accomplishment, that one first step, though, has made me more motivated to take the time needed to practice with her.  Since even before her birth, I have had the hope/confidence/belief that she would walk, and walk well.  I suppose we play a part in that happening.  And, the challenge is on….!

Prayer requests:  That Renny would soon start saying words, God’s hand in her learning to walk, and continued good health.

Here is the video: